New medicines, Tysabri, and Latent TB

[Deb61]

This is in response to the post about the new medince that recently was approved for treatment of MS.  I basically posted that I probably couldn't take the medicine because of having responded to a TB test (Mantoux test).   A dear forum member responded, and here's my reply on a new thread because I didn't want to hijack the other thread with negativity when it is such encouraging news for people with MS who have to take medicine that has to be injected.

My response:

Thanks--  I think my mind is more at ease, but I've been told conflicting information by doctors that have me, well, uh, conflicted.  :)  Here's why:

The literature I was given when I converted to a positve test basically says like I'm a 1 in 10 chance ticking time bomb.  My chance of getting it lowers even lower as getting older but raises if I'm immune suppressed.  It says if my immune system ever was to become compremised (like if I developed immune defiency syndrome) or on steroids for a long time, get run down, etc.etc.  there's a possibility of developing an active form of TB (it just says an increased risk--numbers weren't printed).  

I also read a book (when I thought I had lupus) about a woman's battle with lupus.  On the back of the cover, it said she had died from a TB infection because of the steroids she was on lowered her immune system to fight the disease.  

I was offered the option of going on antibiotics (isoniazid) to lower the chance of getting the active form of TB . This is way before I became sick, and I looked at my chances of developing TB, and turned down treatment because of the side effects and chances of developing an active form of TB and also the fact I had to go into a treatment center and take a medicine daily without missing a dose (I could have developed a form of TB that wouldn't respond to antibiotics).  I've had chest x-rays (2 or 3) and even a CAT scan of my lungs and I don't have any evidence of TB in my lungs.  My neuro wanted to make sure that it wasn't TB causing my MS symptoms.

I really don't know much about medicine at all.  This issue has had my mind in a tizzy because I worry that I'll head down the same path my sister had.  She's unable to walk and is terrible pain as the result of her MS.  She's been on Tysabri about the same length of time I've been on Copaxone (about 2.5 years).  She's fought off some bad infections while on her medication.  

You sound very informed and probably work in the medical community. I hope you're correct!  I've not talked with my neuro about my concerns (other than initialy when he was in the diagnostic phase with me), but I hadn't had to.  I've never had to be on long term steroid treatment for anything (but have had close calls for needing treatment) and Tysabri has never come up as a treatment because I'm doing well on Copaxone.  I am very fortunate.

Before Copaxone, I think I was headed down a path of immobility because I was needing lots of help walking (even to the bathroom).  I also couldn't stand in the shower.  Gradually, I was up on my feet again.  I've not had any severe attacks like this since (other than ON).  However, there's always a concern the Copaxone will stop working for me (literature says it's only 30% effective so it's not an unfounded concern).  

My immune system is on hyper-drive as evidenced by the lesions in my brain and positive ANA.  I bet you're right, but I'm still very, very conflicted and confused about the new medicines, long-term steroid treatments, and Tysabri.  I know the side of my brain that stores information about medical stuff or science stuff is missing (or scarred from an MS lesion) LOL.  Hopefully you or someone can straighten me out!

I'm so sorry to pick your bones about this, but you can see why I'm so confused and conflicted.  Thank you for your response and helping me!  You are awesome (and the others in the forum)!

Debbie

[Deb61]

Thanks for the response!  You are not rambling and what you said helps!  

I've only been exposed to the baccillus as evidenced by the positive PPD.  I don't have active TB.  I don't have any evidence of it from the CT scan or x-rays.  Once you are positive to the test, from what I understand, you are said to have latent TB.  This just means that you have been exposed to it, but it sits in your body as dormant.

Now, whether or not I've had a false-positive test, I don't know.  I have no idea how to find out.  I've had this test as positive about three times and they all three were positive.  I have not had the TB vaccine before, so that's not an explaination of why the test is positive.  I cannot imagine how I was exposed.  I was pretty shocked when I was tested while I worked as a state employee to find this result.  No one in my family has had a positive TB. I don't know anyone that is sick with TB.  My mom's theory is that I am allergic to something in the test.  It's a good theory, but it is just that.  

Many, many people--10 to 15 million in just the US have this latent TB (conversion to a positive test).  10% of these positive people eventually develop active TB.  You are less likely as time goes on to develop active TB, but if your immune system is suppressed, you are more likely.

I shouldn't worry about it because there's nothing I can do about it, and I'm doing well on Copaxone.  However, I hope I'm incorrect about my thinking.  10 million people is quite a bit, and more than likely there's quite a few people in that category that have MS that are needing a more aggressive treatment.  

Thanks again for the response,
Debbie

[Tiredofbeingnumb]

Hi Deb! I hope I can give you some helpful advice. I can tell that you are conflicted, and confused, and I'd be too!  Whether or not you have TB can alter the course of treatments for your MS so, the first piece of advice I can give you is, go find out for sure if you have TB!

The Mantoux test ,or PPD (purified protein derivative) test, is given to see if our bodies react to the TB antigen. An antigen is a protein that induces an immune response. So, if we've been exposed to TB before, our bodies will recognize the TB antigen, and produce an immune response, which shows up as that red bump/welt that they look for, which signifies a positive response.  But see, no test is 100% perfect. I know of one instance in which you can be negative for TB but have a positive PPD.  In certain areas of the world, they give TB vaccines, also known as BCG. Those that get this vaccine will thereafter have a positive PPD test--I think these people are given paperwork so they can prove they've gotten the vaccine and don't have to go through the whole chest xray screen.

From what I understand (I am in no way a doctor), those people who have a positive PPD get a chest xray to confirm. So I find it odd that you have negative chest xrays and they say you have TB? Do you have symptoms suspicious of TB? Did they do any bacterial cultures? If they haven't then I would suggest to you that you get them done. Doctors will generally get sputum samples or BALs (broncheol alveolar lavages)  where they obtain samples from the lung, and (this part I know, I work in a Micro lab) the samples are given to the micro lab, who will then set the samples to particular media to try to grow out any TB.

Now, tuberculosis is part of a particular genus of bacteria, Mycobacteria, which are extremely slow growers. So, just to let you know, if you get a culture taken, it will take weeks for a result. They are just really really slow growing organisms.

But to summarize I definitely think you should get confirmation of this TB diagnosis, if the only test they did was the PPD. I can't comment on latent or active TB as I don't have any experience with that, but I do agree that you shouldn't be on a drug that is going to suppress a large part of your immune system if you do have TB (meaning Tysabri, I don't think Copaxone acts that way). But if Copaxone is working, then you don't have to think about Tysabri!

While I think it is very exciting that we are going to have an oral medication, I also believe now is the time to sit back and see what happens. As more and more people are prescribed fingolimod, we will see the true incidence of the side effects.

I hope my rambling  helps! I don't know how your insurance works, but if possible see an infectious disease doctor.  They would be the most knowledgeable about TB, whether or not you have it and if you don't, why your ppd is positive. Good luck!

[Deb61]

I just found the answer.  I haven't looked in so long, and today I typed a search and boom--there it is.  

http://www.rush.edu/rumc/page-1245962426196.html

There's other sites--not MS sites, but mostly for Chrohn's Disease which Tysabri is sometimes prescribed.

I also found out that 10-15 million people in the US have latent TB (non-active TB) after exposure to the bacillus.  That is an eye opener for me.  

Why isn't it then that people aren't being tested for TB prior to starting Tysabri or any long term medicine that suppresses the immune system?  I know that mandatory testing isn't happening as my sister wasn't tested prior to starting Tysabri.  

My reasoning, of course, may be way off.  But from what I'm finding out from my Internet research is that PML and cancer isn't the only thing that should be considered.

I'm more confused and conflicted than ever.  I'm also a little disappointed that other medicines aren't on the market that don't suppress the immune system.  The 30% success rate for my injectable medicine may be an issue later on down the road . . .

Am I missing something?

[twopack]

I was typing away and nearly ready to post when I hit the backspace key and lost it all.  I have to head out to work so don't have time to re-create right now.  I'll be back but hopefully Quix will come and help you out later today.

It's a very good thing the Copaxone is working so well for you at this time.  No need to hurry into a change.

Mary